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u_r_notalone · Ataxia Friends and Support

Group Information

  • Members: 158
  • Category: Ataxia
  • Founded: Aug 14, 2005
  • Language: English
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Activity within 7 days:

2 New Members - 48 New Messages - New Questions

Description

Hello friends. My name is Christopher and I'm a 38 year old Ataxian (SCA2) from Chicago, Illinois.

I feel that our condition is so rare, and our lives have been altered to such a devastating level, that we have a very unique bond with one another. We should exploit this fact, and bring ourselves together. We Ataxians are all brothers and sisters, both in mind, and in spirit. I truly believe this.

I think support groups are truly a Godsend. I head up my own support group here in the city. I also attend the other Chicago Ataxia Support Group get together in the suburbs without fail, that meets on opposing months, and I totally love it. These are some of the best people on the planet, and I have the best time there. You definitely feel a strong connection with people who have the same illness you do. My wish and my desire is to make it more accessible for all Ataxians in this country, and the world, to share in my joy and the camaraderie I've developed over the years.

I am interested in the sincere innermost thoughts and feelings of my fellow Ataxians. I tend to keep my personal feelings to myself usually, because the majority of my ablebodied friends and relatives can only sympathize with my plight, but my brothers and sisters with this illness can truly empathize.

I want to read your story, your concerns, your thoughts, your fears, etc. No topic is out of bounds. I encourage you to open up, and leave your most honest thoughts and feelings on the page.

Most Recent Messages

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Re: grr......sorry - part 2 for shirley--stress is a possibility too
osteo arthritis is one thing that it possibly could be but also it could be just stress. b4 i divorced i was experiencing pain in the joints. the drs. could
Posted - Sun Nov 22, 2009 6:18 pm
Robin Viland
anmllvr61
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Re: peeing problem
why don't you just use tena pads or poise or even depends if you need to. peeing on yourself sucks! Jen/38/SCA2/OH
Posted - Sat Nov 21, 2009 10:36 pm
Jennifer Mueller
jenmu
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Re: peeing problem
I completely understand your frustration because I deal with same problem.  Even though I can take myself to the bathroom it takes four times longer to get
Posted - Sat Nov 21, 2009 6:41 pm
STEPHANIE KILGORE
srkilgore...
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peeing problem
Actually I am just really angry at my body!  It is just so annoying especially since I don't like to sit doing nothing for 10 minutes.  I wonder if this is
Posted - Sat Nov 21, 2009 5:52 pm
Pinky Patel
pinkdreams_1
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Re: Progression...
I am 27 and I was diagnosed with FA in 1992 but the doctors began searching for a diagnosis in the middle of 1987.  I guess the process of finding a diagnosis
Posted - Sat Nov 21, 2009 5:19 pm
Pinky Patel
pinkdreams_1
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Message History

Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec
2009 423 251 281 440 513 367 273 638 353 450 191
2008 250 224 262 299 285 172 360 345 364 443 226 144
2007 215 170 179 231 264 350 449 309 246 377 311 223
2006 234 219 87 146 203 183 250 223 156 89 141 140
2005 215 315 348 93 109
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